#SolveSleepIns February Update

In November we sent out a survey asking about sleep-in payments and how changes are affecting our members. Disabled people, family members and Personal Assistants/support workers responded.

Some people said their local authority would be reducing their sleep-in rate soon and had contacted them about it. This means that some people will be paid less than the national minimum wage for sleep in work.

Members in Lancashire have told us that their local authority has said their rate will change from the beginning of April from £ 94.20 /night to £47.43/night. Although this change will be phased in over 6 months it will result in staff being paid around half of what they had originally been paid.

Other people said their local authority hadn’t made any changes to their rate of pay, but they were very worried that they might in future.

Most people we spoke to were ‘very concerned’ about the about the legal implications of sleep-ins. Everyone we spoke to wanted to pay their staff the minimum wage for sleep-ins. People wanted to be a good employer and were worried about being breaking employment laws and rights as well as possibly having to pay back pay.  People were concerned about how this would affect both personal budget holders, staff and smaller providers.

People were very concerned that changes to the rate of sleep in pay would have a negative impact on lots of people.

People are worried about:

  • Not having a big enough personal budget to pay for support they need
  • Losing good staff who had supported them for a long time
  • Staff not feeling valued or appreciated
  • Concerns about funding redundancies and back pay
  • Not being able to recruit more staff


A self-advocate said:

“We would like a lot more Person Assistants & Staff back in Northamptonshire & The East Midlands with a lot more hours for me & Disabled People”

A family member said:

“We have very good staff retention and I try to be a good employer. There is a lot of liability stacked up and any claim would be time consuming and expensive.”

A Support Worker told us:

“As a support worker I feel I may be driven out of the care sector due to low income and if this happens across the whole sector the people we care about will not get the level of support and respect they deserve.”


We asked about where people are getting their information and support from about sleep ins. They got information from lots of different places including, other disabled people and families, providers, local authorities, social media and the news.

People thought that guidance and information weren’t very clear and sometimes was different depending on where it was from. They also found it difficult to find any easy read information.

Learning Disability England is part of the #SolveSleepIns Alliance. The Alliance has been campaigning to bring more attention to the issue of sleep ins and prompt a response from the government in,

  • Clarifying its policy position on sleep ins
  • Confirming employers won’t face unfair potential HMRC enforcement
  • Communicating and working with everyone to make sure they understand how ‘sleep-in’ overnight care should be paid for and where any genuinely new money required for this will come from.
  • Working with providers and local government on a sustainable funding solution for overnight care that will ensure care workers are valued and fairly paid.

Our last update included a letter to and response from MP Kelly Tolhurst. The letter recognised the current situation around sleep-ins as an issue. A key message being that the Department of Health and Social Care is telling local authorities and commissioners they should not be using the Court of Appeals judgement as a chance to radically change their fee-paying practices.

You can read the last update here.

The survey is still open if you would like to share your experiences or opinions.

Click here


Shaw Trust Power List 2019

The Shaw Trust Disability Power 100 List is an annual publication celebrating Britain’s 100 most influential disabled people.  The Disability Power 100 List is compiled by an independent judging panel.

The Shaw Trust Power 100 list aims to further inclusivity by celebrating the achievements of those people included on the list.

Included on the 2018 Shaw Trust Power List were Jen Blackwell (founder and Director –DanceSyndrome) and Ciara Lawrence (Learning Disability Campaigner) At number 8 on the list, was Learning Disability England’s very own Gary Bourlet.


There are seven categories for nominations:

  • Arts, Fashion & Design
  • Business, Finance & IT
  • Entertainment
  • Politics & Law
  • Education, Public & Third Sector
  • Digital, Media & Publishing
  • Sport


Nominations for this year’s Shaw Trust Power List are now open.

Click here to vote


Our work on the Mental Capacity (Amendment) Bill – update January 2019

Last year we asked our members what they thought about the Mental Capacity (Amendment) Bill. Self advocates, families, professionals and organisations all agreed on the main points – they were worried about people’s rights, people and their families’ voice being heard and potential conflicts of interest in the proposals. You can see what people said here

Learning Disability England has worked with other organisations and people to keep raising what is important to all our members especially people with Learning Disabilities who might be affected by these changes.  This included making a written submission to the Public Bill committee – you can see ours and all the others here

On 22nd January we were one of a group of organisations who wrote to the Times Newspaper 

Or you can read the letter and an article in the paper if you have a subscription here

Please click for the letter

Please click for the article

More newspapers, TV and radio are doing pieces on this important law. If you have experiences or points you want to share let us know

The full letter is here


The law commission are thinking about driverless vehicles

The law commission are thinking about driverless vehicles. They want to know what disabled people need so that vehicles without a driver are accessible to everyone.

Their consultation is here

It is important that they get to hear about all types of access, not just for wheelchair users. Technology does not always work and they need to know what support learning disabled people need to use transport without a driver there to ask questions. If you can help, please get in touch with them as soon as possible, the consultation closes on Feb 8th. 

The NHS 10 year – what we are thinking so far

We have done a short briefing for Learning Disability England members on the plan and Learning Disability England’s thoughts on it.
A chance for people with learning disabilities and autistic people’s life and care to matter?

Our key points are:
We hope this NHS plan can lead to action and real change, so people know they matter, and everyone gets good treatment.
There are some good things in the plan, but some things have been said before. We want to know how the targets will be checked and who will make sure they happen
We do not agree it needs to take another 3 – 4 years to change community support so people leave specialist hospital or do not need to go in. We think there are other ways this could be changed faster.
You can see the short paper here

Celebrating 70 years of Human Rights – action, resources and inquiry

Learning disability England is one of the 155 groups or organisations that has signed this letter to the prime minister asking her to commit to looking after those freedoms for everyone 

We know this is especially important for people with learning disabilities as we keep seeing examples where people’s rights are not protected or put first in how they are supported. Following campaigning including that led by families, people with learning disabilities and autistic people the Parliamentary joint committee into Human Rights will hold two evidence sessions about the treatment of people with learning disabilities and autism in Assessment and Treatment Units (ATUs) and other inpatient units. One of those is Wednesday 12thDecember

You can see a celebration of the Human Rights of autistic people and people with learning disabilities in the Rightful Lives exhibition

British Institute of Human Rights have a resource on Learning Disability, Autism and Human Rights you can download here

Gary’s Response to the Marmot Report

Living Together in a Fair Way

By The Institute of Health Equity

The Marmot report (easy read version) is about the difference between the way people get healthcare if they have a learning disability and how people get healthcare if they are not disabled. This matters because people with learning disabilities are dying 15-20 years earlier than their non- disabled peers.  There are many reasons that this is happening, including being poorer than other people, living in poorer housing and being lonely- which are all causes of depression, stress and other illnesses.  This is unacceptable, and things need to be changed for the better.  There needs to be properly accessible, good quality housing and the support to find it.  There needs to be information available about affordable heating and bills.  There are schemes to help with bills, but people don’t know about them.  Independent living needs to be properly funded.  There needs to be somebody put in charge to make sure things get better -a learning disability tsar.

Support to have real friendships and relationships is important as this can help stop loneliness.   Information about clubs and events specially for people with learning disabilities needs to be widely available.

Accessible information about money and financial support also needs to be easy to find.

Many of these deaths could be prevented.  There need to be proper health checks and a health plan, which are reviewed regularly depending on the health of the individual.  Good quality, accessible information about keeping healthy needs to be easily available.  People should be encouraged to join in with some sort of exercise or sports.  People need to keep mentally healthy too.  LDE sent out a ‘Winter Special’ with lots of information about keeping warm and keeping healthy.   There should be community learning disability nurses who are trained to support people in their own community and be a link to other services.

Many people with learning disabilities find the support offered by complementary therapies to be really helpful. This needs to be affordable as many people with learning disabilities don’t have a job and don’t have much money.

People & children with learning disabilities may have other long-term serious health problems, like asthma, which all need the correct care and support.

Good health care and support should be lifelong, which would mean people with learning disabilities could get proper treatment & support and wouldn’t die so soon.

Children with learning disabilities are more likely to have mental health conditions, thought to be a third of these children – this needs to be properly treated, not always with drugs, but talking & practical therapies too.  There needs to be people trained specially to deal with children’s mental health.  Teenagers need specialist services of their own.   1 in 3 children with learning disabilities get free school meals, but this depends on a family’s circumstances.  If problems are treated early, it will save money later on.  Inclusive education should be the norm, where children with learning disabilities are educated in mainstream schools.

Communities need to be trained and set up to be completely inclusive.  People should live in the community and area that they choose and not be kept in hospitals or institutions (ATUs) because there is nowhere else for them to live.

People with learning disabilities have lots of skills that could be used in the workplace, but they find it hard to get paid work.  There needs to be employment fairs for people with learning disabilities. People with learning disabilities should be able to have a real career and receive proper pay for it.  There should be help available if a person with learning disabilities wants to set up their own business.   They are often on very low pay or benefits and are often caught in the benefits trap.  Lots of disabled people are losing their benefits when being reassessed – this causes stress, anxiety and worries and is not good for mental health.  People who are unemployed are likely to be poor, suffering from mental health problems.  There needs to be more further / adult education classes so that people can keep themselves occupied during the day and gain skills that could be used in the workplace.   This will benefit the national and local economy.

People with learning disabilities need help to tackle discrimination as they are more likely to be affected than people with learning disabilities.  People from ethnic minorities, of different genders and sexual preferences with learning disabilities, can be doubly discriminated against.  Dimensions hate crime training of police officers is helping to make people and police officers aware that the bullying and discrimination of people with learning disabilities is unacceptable and can lead to serious mental health problems.  Respond are an organisation who support people with learning disabilities when they have experienced trauma or abuse.

Education of all children needs to tackle hate crime – if they are taught early then there will be fewer problems as they become adults.

Support for people with learning disabilities needs to be properly funded.  People with learning disabilities need enough money to live the life they want – a good life.  Banks and building societies need to make proper provisions for people with learning disabilities so that they can manage their own money.

People with learning disabilities in prison need proper support to help them understand what happened and why they are in prison and avoid coming back again.   An individual approach to support is essential because everyone is different.

There needs to be support for families and friends and those caring for people with learning disabilities as they need help too.  People with learning disabilities need to feel part of a family and a community – in whichever way they chose.

It is good to see that the report includes success stories from around the world and makes recommendations about what should happen next.  Public and charitable organisations need to take part in research and look at good practice around the world.

Solve Sleep-Ins Alliance: MP Response and Survey

In October, the Solve Sleep-Ins Alliance wrote an open letter to ministers as we are worried that essential overnight social care support services are at risk.  This is because the government hasn’t offered enough guidance to help people understand what to expect, or do about the decision that staff who work sleep-in shifts don’t need to be paid the national minimum wage. The letter specifically asked for an explanation about how staff should be paid for sleep-ins and how this will be funded by commissioners. You can read the full letter here.

MP Kelly Tolhurst responded to the letter. You can read her letter in full here. The letter recognised the current situation around sleep-ins as an issue. A key message being that the Department of Health and Social Care is telling local authorities and commissioners they should not be using the Court of Appeals judgement as a chance to radically change their fee-paying practices.

We know this is an issue that matter to all our members. As part of our support for the Alliance we have created a survey to collect the views of Personal Budget holders, people who use Direct Payments and families. We are interested in how the issues around sleep ins are affecting you, your family and staff; especially if funding you receive for sleep-ins has changed.

We would appreciate you taking the time to help us gather evidence to support the alliances’ work. The survey should only take a few minutes to complete.

Take part in the survey here.

Social Care Futures

Including everyone session – Thursday 15th November

Next week Learning Disability England members and some of the team will be part of running a session at the Social Care Futures event

Social Care futures is a get together organised by volunteers and supported by a lot of different people with the aim of sharing what is most important and possible for social care in the future

We are working with the Alzheimers Society and  Dimensions to share examples of how people are being supported to live a good life even though often the service system sees them as having complex needs.

Through the session, we want to share what is working but also work out what it will take for those kinds of support to be available to more people

Tim and Andrew are part of the session sharing what they have been involved in with New Prospects in Whitley Bay.


Building Community, not fighting for inclusion?

Tim and Andrew will share New Prospects work in Whitley Bay on being part of local community groups and working in partnership with people and groups

Some of what they will talk about was in this paper


Everyone in – what this session is about?

The session will share practical examples of how people traditionally viewed as having complex support needs are being supported in a variety of different settings to maintain or build relationships, activities or work with a focus on a good life not only their support or care needs.


About Tim & Andrew

Tim Keilty

With a background in the advocacy movement and training and consultancy, Tim now works for a support provider in the North East – New Prospects Association.  He has learned that; telling people what to do on behalf of someone as an advocate, teaching people what to do as a trainer and advising people as a consultant are all easier than actually doing it…

Andrew Strachan

Andrew is an award-winning volunteer and community activist.  Well known, well respected and well connected.  Andrew is nosey, helpful, genuine and friendly; his brain hosts a web of names, stories and connections – the key traits of a community builder.


A life, not a service?

Jennie and Sarah will talk about Local Area Coordination in York

Jennie Cox and Sarah Charlton are Local Area Coordinators in York. The LAC programme has been running for 18 months in York and has already seen some great impact on people’s lives and futures, including those labelled as having complex needs.

We are place-based, strengths-based practitioners offering person-centred, flexible, support to individuals and families in defined geographical areas. Our roles involve community capacity building to promote greater social inclusion for all. Our roles are also integral to system change in coproduction with several other innovative programmes in York, such as our Future Focus adult social care transformation programme, our Social Prescribing service and the Multiple Complex Needs Network. We are social innovators, expert generalists and specialists in thinking outside the box.

Job vacancies


Position: Full-time Support Workers – Supported Living

Contract: Permanent

Hours: Full time, 37 hours per week (including days, evenings, waking nights and some weekends)

Salary: £17,700.80 per annum (pro rata), rising to £19,624.80 (pro rata) upon successful completion of probation.

For the job description click here

For information pack click here

For job application click here

Centre 404 is a friendly, local and thriving charity with an excellent reputation for providing high-quality services to children and adults with learning disabilities and their families throughout North London.


Position: Quality and Development Manager

Contract: Permanent

Hours: Full time, 35 hours per week

Salary: £29,500.00 per annum

For the job description click here

For information pack click here

For job application click here

Centre 404 is a friendly, local and thriving charity with an excellent reputation for providing high-quality services to children and adults with learning disabilities and their families throughout North London.





Position: Eye Care Champions

Location: North West and in London

Hours: Full time 5 day a week or Part time 3 days a week

Salary: £23,500 per annum

Please click here for easy read information pack

SeeAbility is looking to employ Eye Care Champions in the North West and in London. The jobs are for people with lived experience and also people with experience from work. You will be helping people with learning disabilities to get the eye care they need.

SeeAbility provide specialist support, accommodation and eye care help for people with learning disabilities, autism and sight loss.







National Leader (Chief Executive)

L’Arche is a worldwide movement where people with and without learning disabilities share life together and contribute to a more human society. In the UK, L’Arche is a registered charity, overseeing 10 communities and 2 projects – vibrant places of welcome, belonging and celebration – enabling people with learning disabilities through opportunities and support needed to lead fulfilling and empowered lives.

We are looking for an inspirational and highly capable National Leader; to pursue strategic goals, offer spiritual leadership, ensure sustainability across our communities, raising our public profile, inspiring philanthropy and strengthening our ongoing development.

The National Leader working closely with the National Board and national team, will deliver a strategic plan, ensure financial sustainability, oversee compliance to regulations ensuring sustainable high quality services. The National Leader is also a member of the International Leadership Team, ensuring unity and solidarity of the International Federation.

The successful candidate’s own values will be consistent with those of L’Arche. S/he will have commitment to the vision and mission of L’Arche, be an excellent communicator both internally and externally, have demonstrable leadership qualities and experience, including in a complex organisation. We would expect the National Leader to have compassion, courage, integrity and humility.

This role will entail extensive travel throughout the UK and some international travel.

The full application pack can be found here

Closing date for applications is 5pm on 8 March 2019



Position: Project Implementation, Quality and Development Manager (Ref: PIQDM-0219)

Contract: Permanent

Hours: Full time, 35 hours per week (including occasional evenings, weekends, and bank holidays)

Salary: £29,500 per annum

For the job description click here

For information pack click here

For job application click here




Position: HR Assistant (Ref: HRA-0119)

Contract: Permanent

Hours: Full time, 35 hours per week

Salary: £23,000 per annum

For the job description click here

For information pack click here

For job application click here

Centre 404 is a friendly, local and thriving charity with an excellent reputation for providing high quality services to children and adults with learning disabilities and their families throughout North London.


My Life My Choice is now recruiting for a full-time Gig Buddies Coordinator.

Salary: £22,911 – £26,317 pa (starting salary dependent upon skills and experience) plus 6% pension contribution

Closing Date: Monday 11th February (5pm)

Interview Date: Friday 15th February

For the Job descriptions please click here

For the application form please click here

Full details of the post can be found here and the Job Description and an Application Form are also attached to this email.


Position: Premises Manager (Ref: PM-1218)

Contract: Permanent

Hours: Full time, 35 hours per week

Salary: £27,000 per annum

For the job description click here

For information pack click here

For job application click here

Centre 404 is a friendly, local and thriving charity with an excellent reputation for providing high quality services to children and adults with learning disabilities and their families throughout North London.